What is Autism?

You won't often get that from me...

What is Autism? I’m asked this a lot. And I hardly ever respond. They want a collective answer for an individual experience. I don't know that I cannot give them what they want.

What is Autism?

I could tell you it’s a difference in thinking, feeling, doing. 
Yeah, you heard that one. Do you know what that means?
I could regurgitate whole sections of the DSM, line by line by line. 
Flood your inbox with links from WebMd and the Mayo Clinic. 
Share a list of books to fill your Kindle…
There are some movies too. Few documentaries. 
Social media is full of easily digestible “this is Autism” “choose your symptom” “today’s red flag is…” accounts I could gift you. 
If that’s what you want. 
(I’ve got plenty of that.)
Technical. 
Mechanical.
Academic-al.
But what Autism is…you won’t get from me. 
Symptoms.
Red flags.
Stims.
Perfectly curated lists of special interests.
Slides of new words that describe old concepts. 
Slides of old words that describe new concepts. 
I am not the one for this. 

Autism isn’t academic for me. It isn’t technical. It’s not mechanical. I just am. And it’s just me. 
To enter the headspace that would require a more professorial approach induces memories of the moments in which I had to prove to others I existed within this spectrum. 
Do I fit the lists? The perfectly curated symptomatology lists created by those decades younger than I…oh, they have definitely gotten their heads on straight, and I am light as ever, pulled by the might of the wind, never knowing where I’ll end up. 
Diagnostic-wise, do I fit? Where do I fall? This feels like me, this sounds like me…but not quite me. 
I write nothing about what Autism is like for others. 
And I write very little about what Autism is like for me.
What Autism looks like for others, doesn’t appeal to me because I am the sum of my histories and that tells me I experience Autism in a way that so many do not. If I were to write of their experience, I would eventually pull from my own, and the two don’t jive well. 
I am them. 
But not quite. 
They are me. 
But not quite. 
And “not quite” sets us worlds apart. 
Anything I would provide would be of no use to the collective, because Autism isn’t a collective experience for me. 
So, no lists. 
No red flags.
No symptoms.
No fancy words to explain complicated concepts.
No “this is why Autistic people feel/think/do…” 
I make no effort to craft a unifying experience and break it into smaller bite sized chunks for ease of consumption. 
I have no desire to relate my experiences to another. 
To do so would require that I deeply explore my own, attempt to connect it with the collective who most often doesn’t experience Autism in the way that I do, and ultimately, I end up questioning my being. Who am I within this diagnosis? Do I belong…here? 

So if I teach, it won’t be easily digestible. 
Lives shouldn’t go down with ease. 
Swallow whole. 
You get everything. 
My communities have communities.
Complicated, complex relationships within other complicated, complex relationships.
Complicated, complex interactions with my surroundings. 
You don’t break that up. 
You don’t break that down.
When I choose to speak of what Autism may look like, I do so through my own perspective. This is the only lens that operates at 20/20. 
If another relates to what I share, that is a beautiful thing, but I write with myself and my children in mind. 
I am almost always excluded in the shares of what others deem Autism to be, I won’t do that to another, so I stick to what I know best, me.

So, what is Autism? 
It’s a human experience. 
An existence that deviates from what is considered the norm.
Something people can’t quite pin down. 
They know it’s there but to see it up close is something they have little to no experience with. 
People engage with me, and they soon learn I’m not like them, but in what way? They don’t know how.
I look as they do. 
Biologically, I function as they do.
Breathe, eat, sleep…as they do. 
But…something is off to them. 
And when there’s no name for what they see in me, no term that would adequately describe how their interaction with them makes them feel…they assign me one. 
I don’t connect as they do. 
Therefore, I am othered before they know me. 
Put aside. 
This being that is human in appearance only. 
I don’t act as they do. 
And when Autism is attached with my person…I am now closer to human than they originally felt. 
The Autism in me isn’t the Autism they hear about. 
It’s not the Autism they see. 
It’s not the Autism they’re taught.

So, my Autism is…confusing. For both myself and those who have had the opportunity to know me. 
I struggle to understand them, and they struggle to see past the version of myself they have concocted that makes the most sense to them.

And so, my Autism can be lonely. 
Wanting a friend but not knowing how to make them. 
Wanting a friend but wondering if I only want them because others do. 
Autism is knowing you’re different and others know it too, but society only likes certain kinds of differences, not differences like the ones Autism gives me. 
Different is different, but different is bad. 
Different like this requires change. 
Happy, fulfilled lives aren’t found in the different that is me. 

So, my Autism can be isolating. 
My Autism is being swallowed whole by the lands you create in your mind because it’s the safest place you know and where you hold the most control. 
I live there because I am the master of this domain. 
Creator of all, destroyer as well. 
Weaving in and out of worlds designed to keep me occupied for hours and hours. 
I don’t need to visit your world because I made my own. 
Only I have to be part of this world. The world where my physical self resides. The world where the people are. 
The real world. 

And so, my Autism can be the greatest imitator there is…and the Oscar goes to. 
Luring me into the safest spaces of my mind, allowing me the control I lack in the real world, and convinces me I don’t need to exist outside of my head. I have grown accustomed to the characters that live in my head. 
They aren’t real. 
But they are real enough. 
Autism is knowing I am governed by my surroundings. My body does what it wants according to what it’s subjected to. 
I can take some control back with accommodations and proper planning. But my life is dominated by all that is around me. 

So, my Autism is suffocating. Dominating. Crushing, even. 

My Autism isn’t good…nor is it bad. It just is. Something I can’t often put into words. But I often find the beauty in its existence. Strength in my resistance to conform to societal norms. 

Sharing exactly how Autism moves through me feels intimate, a level of vulnerability I am not yet ready for, and I refuse to speak to what Autism is in a collective sense outside of diagnostic presentations for clinical purposes. 

I lay bare a lot in this space. Stripped raw for thousands to see, but I am protective of exactly how Autism presents itself within me and that of my children. What exactly does Autism look like for us, outside of a story? Or poem? 

I want to make people feel. I want people to see us. I want to be more than organic masses of red flags and symptoms. More than representations of the latest terms. I wanted the right to explore the breadth of our humanity. 

So, nah, you won’t often get what Autism is from me.